Sunday, March 31, 2013

The primary front line autism service providers, regardless of where one lives, are parents. In Canada at least parents have also been the first and most effective advocates for services for autistic children from BC to Ontario to New Brunswick to Newfoundland and all points between. For most parents recognition of that fact is important only to prevent others with less understanding of the impacts of autism on our children from purporting to speak on their behalf when they do so contrary to our children's best interests. The only award most of us really need though are the hugs and smiles we receive from our children. Following are some awards Conor has given to his Mom and Dad:

This picture above was taken during my recent 6 day hospitalization for a chest infection and asthma attack. Lights were harsh for picture taking and the cell phone camera was not great so the picture is blurred but speaks volumes. Conor missed his Dad and I missed him. His visit cheered his old Dad considerably. Conor's hugs and smiles have added immeasurably to my enjoyment of life and helped me stay focused as an autism advocate on what counts most - helping my son and others with autism enjoy a fuller more rewarding life. Conor has not been skimpy in handing out awards to his Mom and Dad:

The Autism Society New Brunswick meeting last Saturday March 23, 2013 was scheduled to be a regular meeting with election of a new Board of Directors and routine business. That plan was changed, the election was adjourned, at my request, and after passage of a motion to that effect, and the routine business, for very good reason did not take place. Instead ASNB took full advantage of the presence at our meeting of Education and Early Childhood Development Minister Jody Carr.

Minister Carr had to adjust his schedule to attend and we only received confirmation he would be there the day before the meeting. The brief notice though did not reflect the nature of Minister Carr's attendance. He was present for the entire meeting, he participated actively throughout, took notes and answered questions openly and directly. In the 12+ years that I have been an active autism advocate we have had meetings with premiers and cabinet ministers in their offices but this was the first time I know of that a cabinet minister actually came to one of our meetings.

Education and Early Childhood Development Minister Jody Carr attended our meeting and to his credit was fully engaged. Details of the meeting and discussions with the Minister will be published soon. For today I would like to say thank you to Minister Carr for his presence and active participation at our meeting. We look forward to future discussion with you, and hopefully your colleagues, of matters affecting New Brunswick children and adults with autism.

Friday, March 29, 2013

I am not spurning the recognition nor arguing with the list of autism advocates recognized by the Autism Society Canada in partnership with the Governor General of Canada with Queen Elizabeth II Diamond Jubilee Medals. I do not seek medals of any kind or financial reward for my autism advocacy, I seek better treatment, better services, better lives for my son and others for whom autism is a serious disorder that limits their daily functioning (DSM5) and limits their lives. But it is nice to be recommended by the Autism Society Canada which is also itself comprised of autism advocates. I have to point out though a curious anomaly that occurred with the New Brunswick recipients ... three men and no women were named despite the important role of so many women in NB autism advocacy. Also one person with Aspergers who contributed here in New Brunswick, and in Senator Munson's autism proceedings, was also left off the list.

This might be just a question of numbers, with three allotted for NB, but the reality is that in New Brunswick far more women than men have been involved in public autism advocacy and many of them have played very important roles in bringing New Brunswick international recognition for its autism services and programs (even though more progress is still needed).

I am listing the following names of women in New Brunswick who I know advocated publicly and with great result. More names could be added for sure but these are some that I know first hand are deserving of recognition for their efforts. Personally I did not seek the same goals as some of those listed but they were all persistent, effective autism advocates. In alphabetical order (by last name):

In addition to the omission of women from NB's list of recognized autism advocates it would be just plain wrong to ignore the very important efforts and contribution of a person with Aspergers who overcome some of his own personal challenges to speak publicly in front of parents' meetings, sat on the ASNB Board of Directors and was recognized and quoted in Senator Munson's autism report Pay Now or Pay Later:

(…) if you pay for it now, look at the return you will get on your investment. The people with autism will get out in the real world and get jobs, and that will stimulate the economy. Or you can pay later, which means they will go into group homes and it will cost the taxpayers a lot of money in the long run to keep them there.

Jason Oldford, Fredericton,New Brunswick (12:32)

I am sure it was difficult for the Autism Society Canada people who had to pick the names of autism advocates across Canada to receive medals. I simply want to highlight the many women, and Jason Oldford a gentleman "on the autism spectrum", who also made very large contributions to autism progress in New Brunswick.

Thursday, March 28, 2013

Edmonton MP Mike Lake, whom I have met (at IMFAR 2012 in Toronto) and communicated with a few times about autism in Canada, have different perspectives on the proper role for Canada's national government in addressing Canada's autism crisis. The government of Stephen Harper, of which Mike Lake is a member, is not a strong supporter of Canada's national medicare system generally and has done nothing to advance in a meaningful way the National Autism Strategy advocated for by former and present opposition MP's Andy Scott, Peter Stoffer, Shawn Murphy and Glenn Thibeault and by Senator Jim Munson. I know though that Mike Lake is a dedicated father and a strong advocate for his 17 year old autistic son Jaden, who appears to have many similarities to my own son with autism of the same age. I enjoy seeing Jaden in television and video appearances and was pleased to read the Ottawa Citizen article about the Autism on the Hill Rally and the pictures featuring Jaden Lake.

Thank you for advocating for autism awareness and services Jaden! Well Done!

Friday, March 22, 2013

Anyone with an interest in autism in NB is invited to tomorrow's meeting at MacLaggan Hall, UNB Fredericton Campus, doors open at 12:00 noon, meeting starts at 12:30 pm. Special guests expected to attend include:

Wednesday, March 20, 2013

From last years increase of autism prevalence rates from 1 in 110 to 1 in 88 a new report, based on parental reporting now indicates a rate of 1 in 50. Time once again to call out Inspector Renault (looking much like Insel, Grinker and other autism can not really be rising true believers) to round up the usual suspects of increased awareness, ascertainment and any other non environmental excuse they can manufacture to rationalize the failure to conduct the necessary environmental research into autism causation. Following is last years comment on the tired and pathetic posturing of the autism epidemic apologists:

"The usual suspects

The people habitually suspected or arrested in response to a crime. The phrase is usually used in regard to scapegoats rather than actual perpetrators of the crime in question.

This expression has a specific and unambiguous origin. It was spoken by Captain Louis Renault, the French prefect of police, played by Claude Rains in the 1942 U.S. film Casablanca. The context was a scene in which the Nazi, Major Strasser is shot by Humphrey Bogart's character, Rick Blaine. Renault was a witness to the shooting but saves Rick's life by telling the investigating police to "round up the usual suspects"."

CDC Director Dr. Thomas Frieden, playing the part of Captain Renault from the film classic Casablanca, rounds up the usual suspects as the CDC announces stunning new autism rates in the US of 1 in 88 children, 1 in 54 boys:

"DR. THOMAS FRIEDEN, director, Centers for Disease Control and Prevention: There are a few things that we know for certain and there are some things that we don't know. And we always want to be up front about what we do and don't know.We know for certain that doctors are getting better at diagnosing autism. We also know for certain that communities are getting better providing services to children with autism and that at CDC we've gotten better at tracking all of the children in a community who may have been diagnosed or identified with autism.So we know that some of the increase is certainly because we're detecting more cases of autism. Whether that's all of the increase or not, we simply don't know. But we do know that there are many children with autism and that many of them need services and that diagnosis is often too late.So whether this is a real increase or not is really secondary to saying that this is a big problem, lots of people are out there who need services and would benefit from services."

There is no dispute that diagnostic change, increased awareness and better detection probably explain some of the repeated and astonishing increases in autism diagnoses. There is, however, no definitive study, or group of studies, which assigns 100% responsibility for the pre-2012 increases entirely to these factors. There is absolutely no credible basis for anyone to state that the recent increase from 1 in 110 to 1 in 88 over a period of a few years is entirely attributable to diagnostic and social factors.

Autism research funding has historically been directed overwhelmingly towards genetic autism research. Only in recent years has any significant support been provided for environmental causes or triggers of autism, causes and triggers which might, and probably are, involved in these stunning increases in the numbers of children diagnosed with autism.

The safe route to take in the face of such astonishing numbers is to invest more monies in treatment, education and residential care of those affected by autism disorders and to invest substantially more research dollars in exploring the environmental causes of autism disorders. We must search for all the possible suspects as we try to determine what is causing the epidemic of autism disorders that increasingly affect more and more of our children.

KCBS-TV Los Angeles "Mom Sickened" and the New York Daily News "Tantamount to Torture" report a story of horrific, torturous abuse by professional caregivers of a 31 year old autistic man with the reported mental age of a 3 year old. The incredible abuse was discovered after the man's mother noted bruising on his body and installed cameras which recorded the abuse. The CBS video report follows but as CBS cautions this is disturbing especially if you are the parent, as I am, of a son or daughter with severe autism:

While the depravity of this abuse may be unprecedented similar abuse has been reported in the past. Security cameras unknown to the abusers have been the most reliable way of bringing such abuse into the light of day. In 2007 in a New York group home a severely autistic woman was beaten by attendants, abuse which was only discovered by cameras.
These are incidents where cameras caught the abuse of persons with severe autism and intellectual challenges, persons who could not speak up for themselves. The odds are good that where those cameras are not present similar abuses will occur and will go unreported.

Cameras are the only protection many severely challenged persons with autism will have and should be mandatory in all facilities and homes where care is provided for those who can not speak for themselves.
Severe autism realities must not be ignored, can not be ignored. If we ignore these realities, if we fail to protect our loved ones who can not protect or speak up for themselves we are abandoning them to cruel fates. Steps must be taken to ensure they live in decent, safe conditions.

Monday, March 18, 2013

Parents and others affected by autism disorders in New Brunswick are invited, and asked, to attend the ASNB 2013 AGM this Saturday March 2013 at MacLaggan Hall UNB Fredericton formally beginning at 12:30, but open for discussion at 11:00 am. Autism families have been excluded from government autism decisions, we are no longer stakeholders in the eyes of the Alward-Carr-Porter administration in matters affecting persons with autism, and if we do not prepare, once again, to speak up and be heard our children and loved ones with autism will suffer the consequences. Come to the meeting this Saturday and prepare to fight for our loved ones with autism.

At present NDP leader Dominic Cardy and former NB Liberal leadership candidate Nick Duivenvoorden had indicated they will be attending the ASNB AGM. An invitation to the Alward government made 7 weeks prior to the ASNB AGM was met with a reply indicating that all none of the invited ministers were free this coming Saturday afternoon. Autism parents, because of our past advocacy successes, and insistence on serious, evidence based help for autism have been consciously excluded from autism decisions by thcurrent government.

Autism progress resulting from strong parent advocacy was made over the years. Early evidence based intervention, autism trained education aides AND the reversal of the decision to close the Stan Cassidy Centre autism team all resulted from autism parent advocacy. All gains were made through direct discussion with concerned political leadership including Bernard Lord, Tony Huntjens and Shawn Graham. Some members of the bureaucracy were helpful but for the most part officials at senior levels in Education and Health in particular opposed vigorously the autism progress that has been made. Since the election of the current administration the bureaucracy has been working hand in hand with the Alward-Carr-Porter government to exclude autism parents from government decsion making affecting young children and students with autism.

The Telegraph-Journal featured a full page promotion of Acting Ombudsman Youth Advocate Christian Whalen which implied wrongly that progess had been made by this government and more progress was on the way ... if only parents ... would remain patient. Mr. Whalen who wrote the article was ill informed. At the end of the day, while no doubt a good person, Mr. Whalen must follow the mandate of the government which signs his pay cheques. He spoke of a "stakeholders" meeting at which autism programs on line were being developed as "cutting edge" progress. The stakeholders did not include the Autism Society NB or autism parents who are being consciously excluded from autism "stakeholder" meetings. Government officials are of the view that autism parent participation would be "sloppy" as they stated at the so called stakeholders meeting. The truth is parent advocacy caused our autism progress and government bureaucrats have been fighting back not in the best interests of autistic children and adults but simply to regain control of autism issues they once ignored.

Contrary to the Whalen article's implications every aide and resource teacher currently autism trained in NB schools was trained at the UNB-CEL Autism Training Program not by the Department of Education and that was done in response to parent advocacy pressure. The Education officials purchased rights to the program theory but have still not developed a practicum component. The practicum component is vitally important and will not be ready for 1-2 years if then. When it is done it will, based on historical discussions, be done "in house" subject to department and union grievance pressures. ASNB opposed such in house training vigorously and successfully despite education department reactions including legal pressure directed at me personally. Based on past history and based on the realities of the CUPE 2745 collective agreement and grievance process it is highly unlikely that the practicum will include rigorous, if any, testing requirements, times for course completion or even criteria for entry and graduation from the in house autism "training".

Today children with autism are escorted from NB schools after calls are made to police, fire and emergency responders. Some are charged criminally. Meanwhile educators follow official policies of physically grabbing children with autism and removing them to isolation rooms. The predictable aggressive response by some autistic children is then considered as the bases for criminal charges.

Parents with autism diagnosed toddlers face delays in getting early intervention for their children. Months of delay will follow admission to the early autism intervention program, months that will be charged as "treatment" on the individual child's record.

Adult care, as always, remains ignored under this as under all previous administrations. Action is just not the strong suit of bureaucracies particularly when hamstrung by philosophy based, cliche thick "community" philosophies which, on the evidence, are in fact counter productive. While our government has never tired of yanging about community persons with severe autism are sent by our governments to psychiatric hospitals and institutions outside of New Brunswick as they have for many years. It is the government adherence to cliche based community philosophy, and refusal to consider development of alternatives, that results in the full institutionalization of adults with severe autism challenges.

If you are concerned about your child or family member with autism, if you are autistic and need assistance, or if you are just genuinely concerned about the challenges faced by persons with autism disorders in New Brunswick meet us this Saturday at UNB-Fredericton, MacLaggan Hall.

Friday, March 15, 2013

April 2, 2013 will feature another World Autism Awareness Day around the world. Many blue lights will shine, politicians will pose and take credit for helping advance the cause of autistic persons and their families, countless media reports will talk about the gifts of autism and television series and movies alike will feature gifted individuals and autism, once again, will be portrayed for public consumption as the domain of brilliant if socially quirky personalities. Little if anything will be said about the vast majority of those with autistic disorder who are limited by intellectual disability, or about those who suffer from obsessive behaviors, serious sensory issues, epilepsy and seizure activity, self injurious behavior, or spontaneous aggression in the form of property and furniture damage or even reactive, spontaneous aggression towards parents and caregivers. Of course nothing whatsoever will be said about the ultimate realities facing autistic children and their families. We all age, our children become adults and the parents who care for their children grow old, feeble and .... deceased. When these events occur our severely affected autistic children will live out their time in various types of institutional arrangements including psychiatric hospitals ... if they are among the fortunate with any place to live.

Feel free to keep shining your blue lights and repeating the words autism awareness until you are ... blue in the face. But please try to actually raise autism awareness by talking about the serious challenges facing those with autism symptoms and disorders from which they will suffer for the rest of their lives.

Shine your blue lights but start being realistic. If you really care about some one with autism and want to help the and make positive changes start by telling the world the truth about autism. Create some reality based autism awareness.

Wednesday, March 13, 2013

Last Thursday I was in substantial difficulty with a possible lung infection and an asthma attack. While waiting for my turn at the after hour's clinic I rose from my seat and walked the few feat to the counter to check my place on the waiting list. As I did so I could not breathe, or it did not feel like I was getting any air anyway. I tried to pump air into my body by leaning forward and straightening up quickly while I was standing at the counter. The on call doctor came out and spotted me and waived me emphatically to a side room and an oxygen tank. The good doctor told me I should go to the local hospital emergency room (the DECH). I tried arguing about the need to go but he insisted. When I told him I would drive up I was informed I was not driving anywhere, an ambulance had already been called. At the hospital after getting some emergency care I was planning to come home that night, again no such luck. Next morning again I was informed my stay at the hospital would be extended. Finally Tuesday, yesterday after fine care, treatment and testing I was discharged. My first overnight hospital stay as an adult had been a 5 nighter.

I was not under any serious hardship during my stay, a bit of difficulty which was well treated, the boredom was toughest of all. At home I heard that Conor had not taken my absence well with some very challenging behavior that Heather had to handle. Heather and Conor's brother brought him to the hospital to see Dad and his mood .... and Dad's ... picked up considerably. Conor needed to see his ol Dad and I needed to see my buddy. Conor to the rescue!

Many thanks to my friend Dawn an emergency room RN who was able to drop by a few times and provide reassurance. The Emergency Measures team and all the hospital staff from the cleaners to the doctors on call at the acute care wing I was on were all outstanding.

The good doctor who sent me to the hospital without listening to my attempts to negotiate my way home right away told me my oxygen levels had been at dangerously low levels that night.

Premier David Alward's government has transferred control over New Brunswick education policies and practices to the NB Association for Community Living. The NBACL is, beyond doubt, an organization of people with good intentions committed to improving the lives of those with intellectual challenges. I wish , as the father of a son with severe autism disorder and profound developmental delays I could support them. Unfortunately the NBACL, and its federal counterpart the CACL, have subscribed for decades to a philosophical, non-evidence based, belief that all children's best interests are served, protected and accommodated by placement in a regular classroom. Alternative learning arrangements are demonized as "segregation" when in fact such arrangements constitute evidence based accommodation of disabilities that some children, including my son with severe autistic disorder and profound developmental delays, need in order to gain access to a real education.

In handing control over the education of children with disability challenges to NBACL the Alward government is acting in defiance of its obligation to ensure that education decision making represent the best interests of children founded on evidence. It has placed many children with autism and other severe disability challenges at risk of being deprived of meaningful access to a real education, at risk of suffering mental and physical harm and at risk of being charged with criminal offences. The Alward government has sacrificed some children with autism disorders and other disabilities to a fairy tale, one that is known to be untrue by many teachers, education assistants and parents.

In handing control over education of children with disability challenges to NBACL the Alward government has abandoned democratic principles by surrendering one of government's most important responsibilities to an outside organization unaccountable to voters. Equally concerning is the fact that the NBACL does not subscribe to modern, evidence based approaches to educating children with disabilities.

The NBACL adheres to one philosophical principle which it places above the best interests of individual students and which ignores the government's existing Inclusive Education Definition policy which requires education decision making based on the individual needs of the student and founded on evidence (not simplistic extreme inclusion philosophy) ... needs which in some cases, such as my severely autistic son, require education outside the regular classroom. In any public discussion by NBACL reps of the Inclusive Education Definition no mention is made of the stipulation that inclusive education decision making is premised on individual student needs based on an a foundation of evidence requirement. Nor is any mention made of the fact that students with special challenges, autistic students in particular, in some instances very young, grade school students, are sent home from school when they can not function in NBACL inclusive classrooms.

My son is severely autistic with profound developmental delays. He has been well accommodated in Fredericton schools since he was removed from the regular classroom at our request. He was overwhelmed in the regular classroom and came home each day with bite marks on his hands until he was removed to an alternate, individualized instruction area where he worked with an autism trained Education Aide. Some children for whom the regular classroom is not the answer are not as fortunate though; some are expelled from NB schools, sometimes under police escort, and some are charged with assault when their behavior, their inability to exist and function in the NBACL dominated school system results. It is always the child who is blamed never the ridiculously simple, non evidence based, unthinking philosophy of the NBACL which is forced on parents, education assistants, teachers, resource teachers and education department officials who must fall in line and repeat the NBACL belief in extreme, everyone in the regular classroom fairy tale.

The children who are sent home and in some cases charged with criminal offences are powerful evidence that the simplistic everybody in the mainstream classroom philosophy is a failure that has hurt some children and impedes their access to a meaningful education contrary to the Education Act, the official Definition of Inclusive Education and contrary to principles enunciated in the Moore decision of the Supreme Court of Canada.New Brunswick Inclusive Education Definition

The New Brunswick government Inclusive Education Definition resulted from two inclusive education reviews: the MacKay and Ministerial Committee reviews. Both were initiated by the Lord government although the Ministerial Committee review continued under the Graham government during which time the Inclusive Education definition, after years of consultation with a wide range of stakeholders, was concluded. I attended throughout both proceedings as an Autism Society New Brunswick representative, and advocated, over the persistent opposition of NBACL representatives, for an evidence based approach to the individual education needs of students. Those principles are set out throughout the Inclusive Education definition but particularly in the vision statement, the student centered principles and the accommodation sections (underlining added for emphasis):

"Inclusive Education

I. Vision

An evolving and systemic model of inclusive education where all children reach their full learning potential and decisions are based on the individual needs of the student and founded on evidence

III. Overarching Principles

The provision of inclusive public education is based on three complementary principles:

(1) public education is universal - the provincial curriculum is provided equitably to all students and this is done in an inclusive, common learning environment shared among age-appropriate, neighbourhood peers;

(2) public education is individualized - the success of each student depends on the degree to which education is based on the student’s best interests and responds to his or her strengths and needs; and

(3) public education is flexible and responsive to change.

Recognizing that every student can learn, the personnel of the New Brunswick public education system will provide a quality inclusive education to each student ensuring that:

Student-centered

1. all actions pertaining to a student are guided by the best interest of the student as determined through competent examination of the available evidence;

2. all students are respected as individuals. Their strengths, abilities and diverse learning needs are recognized as their foundation for learning and their learning challenges are identified, understood and accommodated;

3. all students have the right to learn in a positive learning environment;IV. Accommodation Accommodation means changing learning conditions to meet student needs rather than requiring students to fit system needs. Based on analysis, student needs may be met through individual accommodation or, in some cases, through universal responses that meet the individual student’s

needs as well as those of other students.

The NBACL now determines education policy and indoctrinates NB teachers and educators but it ignores the principles of evidence based accommodation of individual students and insists on regular classroom placement for all students regardless of needs. Some may dispute these points but they are derived from repeated public statements:

2012 -David Alward's Admission That Community Living Association Sets Policy and Indoctrinates Senior Government OfficialsNew Brunswick Premier David Alward has publicly acknowledged the role of the New Brunswick Association for Community Living related organizations in setting inclusion and disability policy in New Brunswick as was made clear on the community living organizations' IRIS site. IRIS is the Institute for Research and Development and Inclusion in Society. It purports to be the "research" branch of Community Living Assocations across Canada. The IRIS board of directors consists of present and former Community Living Association officials from accross Canada including former NBACL official Lorraine Silliphant. In February 2012 IRIS spent a week indoctrinating high ranking New Brunswick education officials including Deputy Ministers and Assistant Deputy Ministers in the Community Living Association philosophy based policies of full mainstream classroom inclusion as was bragged about on the IRIS web site:

"Premier Alward of New Brunswick acknowledges IRIS’ ‘Policy Making for Inclusion – Leadership Development Program’New Brunswick Premier David Alward issued a letter Friday February 4th to all participants in the ‘Policy Making for Inclusion – Leadership Development Program’ that will be delivered in Fredericton by IRIS February 6-10 to senior officials with the Government of New Brunswick. The program is designed to assist policy makers achieve the government’s platform commitment to “enable New Brunswickers with disabilities to actively participate in all aspects of society and take their rightful place as full citizens.” With Deputy Ministers, Assistant Deputy Ministers, Human Resources Directors and Policy/Program Directors from across government participating in the week-long series of leadership development workshops, major strides will be taken towards creating a public service in New Brunswick ready and able to deliver on the government commitment to people with disabilities. In his letter, Premier Alward thanked The Institute “for developing this program to inform our public servants on the latest research on disability and inclusion…” A core resource for the program is the guide to Disability and Inclusion Based Policy Analysis just published by The Institute."

2013 - NBACL Trains Principals and Teachers

"25 FEB 2013 11:00PM

SCHOOLS AND COMMUNITY LIVING ASSOCIATION PARTNER UP

CAROLYN THOMPSON

TELEGRAPH-JOURNAL

SAINT JOHN – Schools in southern New Brunswick are seeking support from the New Brunswick Association for Community Living in training principals and teachers on inclusive education approaches.

Shana Soucy, manager of inclusive education for the association, said research has shown that without leaders who champion inclusive education, schools have a more difficult time implementing policies to make learning accessible to all students.

“I think we are doing a lot better with having the kids in the classroom, but are they really included in the lessons or are they just sitting there. We don’t want the segregation in the classroom, we want them to be included in the lesson,” she said."NBACL Manager of Inclusive Education Shana Soucy identified problems, with inclusive education in New Brunswick, on the NBACL Blog site:

Even though Bill 85 was introduced in 1986 stating the full participation of all students in all aspects of school and community life, without regard to their disability or difficulty, we are still coming across many issues regarding exclusion:

Segregated classrooms and segregated programs across schools in New Brunswick

Modifications and accommodations are not being properly done to students’ lessons as noted in their Special Education Plans in order for them to have success in school

Some students are being excluded from school activities (ie: field trips)

Students are not only excluded from the regular classroom, they are not able to have lunch in the school cafeteria, instead, having their lunch with other students with a disability and Educational Assistants in the Resource room of the school

Some of what Ms Soucy describes as "segregated" classrooms and "segregated" programs" are actually evidence based accommodations of the needs of some students with autism disorders like my son Conor who was overwhelmed in the regular classroom and who receives individualized ABA based instruction which is not assisted by being in a regular classroom with other students. In other words the NBACL officials who now set education policies and train senior government officials, educators and teachers describe evidence based accommodation of the individual needs of some autistic students, including my son, as segregation, as inclusion "issues". Ms Soucy insults and attacks accommodations specifically made to help children like my son with severe autism and intellectual disability challenges. NBACL Inclusve Education Manager Soucy's comments about the Resource room are an insult to students like my son who starts his day and has lunch in the resource room and enjoys tremendously his time at the Resource Centre at Leo Hayes HS. Ms. Soucy's issues with Resource Centres are not my son's issues. Following is a picture of my son on St. Patrick's Day, March 17 2011 as he prepared to leave for school to start his day at the LHHS resource center. He does not feel like he is being excluded or segregated at all. He is fact being accommodated and enjoys his learning experience:

My happy, smiling son Conor can't wait to get to LHHS with a

resource center for some purposes and individual environments

for his ABA based learning. He also uses resources such as the

gym, library, and swimming pool in common with all students.

For Conor these arrangements represent accommodation not segregation.

Contrary to Ms Soucy's non evidence, philosophy based, beliefs Conor loves his time at the resource centre and his so called "segregated" individualized, evidence based, ABA instruction. Each evening he packs his lunch bag, places it in his school bag and when he gets up places it in front of the door to make sure it accompanies him to school. These resources have been vital accommodations of his needs as a student with severe autistic disorder and profound developmental delays. NBACL has clearly targeted for closure resource centers and individual areas of instruction in NB schools. I am very concerned that the fundamental ignorance of the NBACL adherents will deprive my son, and others whose needs are accommodated outside the regular classroom of these very valuable accommodations of their individual needs.

Imposition of NBACL Icon Gordon Porter's Simplistic, Extreme Inclusion Philosophy on Department of Education and Early Childhood Development

Even without the indoctrination of high ranking government officials in a week long inclusion training/indoctrination session based on Community Living policies, and even without government contracting out "disablity" training of teachers to the NBACL on an ongoing basis, NBACL has exercised a dominant role in the current NB government. Gordon Porter, an icon of the NBACL and federal CACL organizations, was a member of the Alward transition advisory team and subsequently conducted, together with NBCLA director Angela Aucoin, yet another inclusion review which was not conducted objectively or transparently and simply reflects Mr. Porter's philosophy as stated by him during a Newfoundland appearance and reported in a Western Star article by Diane Crocker:

CORNER BROOK — Gordon Porter believes inclusion is the most natural thing in the world. The educator and director of Inclusive Education Initiatives presented a session on inclusive education at the Greenwood Inn and Suites on Thursday. Porter, who is also the editor of the Inclusive Education Canada website inclusiveeducation.ca, spoke to parents, educators and agency professionals who deal with children with special needs at the pre-conference for the Newfoundland and Labrador Association for Community Living Conference taking place in the city today and Saturday. The session was sponsored by the Community Inclusion Initiative.

Porter’s session revolved around the theme of parents and teachers working together to make inclusion work.“It means kids go to their neighbourhood schools with kids their own age in regular classes,” said Porter.“If you’re seven years, old you go to the school just down the street. You go in a class with other seven-year-olds, and you’re supported if you have extra needs. “It’s so simple, it’s that simple,” said Porter."

Mr. Porter will forever cling to his belief that inclusion is simple if you just dump everyone in the regular classroom regardless of their needs. There is nothing simple about autism though and I defy anyone to point to an informed source that would say there is. As the parent of a severely autistic child with profound developmental delays, sensory issues and, like many autistic children, capable of engaging in serious self-injury when overwhelmed I can not allow myself to wallow in such ignorance.

The new DSM5 autism spectrum disorder criterion B expressly recognizes highly restricted, fixated interests, excessive resistance to change, abnormal in intensity or focus, hyper-or-hypo-reactivity to sensory aspects of environment, factors which, for some students with autism make the regular classroom an obstacle to learning and a risk to the child's safety:

Movie theater chains have recognized autism challenges and realities by trying to present sensory friendly showings of some movies. Self-injurious behavior, (such as head banging and .. hand biting), and responsive (not planned) aggression to others, are recognized as a common problem for many with autism disorders. The appropriate, evidence based approach to dealing with such issues is to provide a continuum of alternative learning arrangements, meaningful learning and functioning with the environment selected and individualized assessments of students skills and abilities to function within the setting selected, as described on the web site of the University of North Carolina TEACCH program which has substantial influence in academic and professional autism circles:

The TEACCH program recognizes the important value of preparing all persons with autism for successful functioning within society. Each person with autism should be taught with the goal of successful functioning with as few restrictions as is possible.

Decisions about including children with autism into fully integrated settings must be made consistent with the principle of the "least restrictive environment" as a guiding principle. No person with autism should be unnecessarily or inappropriately denied access to meaningful educational activities. However, it should be noted that the concept of least restrictive environment requires that appropriate learning take place. Placement decisions also require that students be capable of meaningful learning and functioning within the setting selected.

Activities which are inclusive for children with autism should be offered based on an individual assessment of the child's skills and abilities to function and participate in the setting. Inclusion activities are appropriate only when preceded by adequate assessment and pre-placement preparations including appropriate training. Inclusion activities typically need to be supported by professionals trained in autism who can provide assistance and objective evaluation of the appropriateness of the activity.

Inclusion should never replace a full continuum of service delivery, with different students with autism falling across the full spectrum. Full inclusion should be offered to all persons with autism who are capable of success in fully integrated settings. Partial inclusion is expected to be appropriate for other clients with autism. And special classes and schools should be retained as an option for those students with autism for whom these settings are the most meaningful and appropriate.

Extreme inclusion is not simple, those who truly believe it is do not have actual first hand knowledge of an overwhelmed autistic child who bites his hand in one of Mr. Porter's inclusive classrooms, or one who reacts to the stresses of school and is sent home under police escort; in some instances to face criminal charges. Inclusion may be simple for Mr. Porter but the simple truth is that he just ignores the evidence, all the evidence, any evidence which contradicts his cherished, fairy tale belief that the regular classroom solves all problems, even evidence of physical and mental harm that results from imposition of extreme inclusion policies on all students regardless of their needs.

At a Fredericton session during the Porter-Aucoin review discussion focused on integrating early autism intervention services into a smooth transition into the school system. ASNB was not invited to the Porter-Aucoin inclusion review session even though it was our advocacy that resulted in the establishment in NB of evidence based early autism intervention AND in the training of 4-500 education assistants and resource teachers at the UNB-CEL Autism Training program (also established in response to our ASNB parent advocacy) a program recognized by the Association for Science in Autism Treatment as a Canadian leader in provision of evidence based intervention for autistic children.

I became aware of the meeting and asked to be able to attend. The discussion went around the table and when it came to me and I tried to speak for the first time I was told by the person conducting the session that they wanted someone else to be given a chance to speak. I did not understand her statement since I had not addressed the group but I did not object. The discussion went around the table again and when I tried again to speak I was again told that they wanted others to be given a chance to speak. I had said nothing during the discussion. I asked if they wished me to leave and was told no and given a chance to speak although nothing I said was reflected in the report that was issued by Porter-Aucoin.

As an ASNB rep I advocated persistently for evidence based accommodation of autistic students including those who required learning outside the regular classroom. During the MacKay review Mr. Porter grew visibly annoyed with me and another ASNB rep Dawn Bowie because of our position. Mr. Porter informed us that "you people should be thankful for what you have". I have never doubted since that day that Mr. Porter's attitude toward educating children with disabilities, even children with autism, a subject with which I and Mrs. Bowie were much more learned and experienced, must conform to his everybody in the classroom beliefs. Neither Mr. Porter, nor NBACL paid officers or representatives have ever deviated one iota from his fanatical obsession with the regular classroom.

NBACL Dominance in the Alward-Carr Government

NBACL domination of the Department of Education and Early Childhood Development is clear and indisputable. Apart from Alward transition adviser Gordon Porter, NBACL Official Krista Carr is the wife of Early Education and Childhood Development Minister Jody Carr. Minister Carr's brother Jack Carr, also a member of the governing Alward Conservatives, is a former NBACL employee. Danny Soucy is the Minister of Post-Secondary Education, Training and Labour and worked for both the New Brunswick Association for Community Living Inc. and the Canadian Association for Community Living from 1988 to his election in 2010. Teachers who are most compliant with NBACL inclusion beliefs receive awards handed out by NBACL officials.

No one openly questions the philosophically based, non evidence based, policies of the NBACL which sets the Alward government's education policies. Teachers, teacher aides/education assistants and other school personnel have told me off the record for many years, including during the MacKay and Ministerial Committee reviews that they sympathize with my concerns about accommodation of some children with autism, and other students who need an alternative place of learning, but they are unable to speak out. The message is clear, those who conform to NBACL extreme inclusion doctrine will receive awards handed out periodically by NBACL, those who don't ... well they have no choice but to conform.

Conclusion:
As a lawyer I have represented some students on the autism spectrum who have not been accommodated in the everybody in the classroom fantasy of the current Department of Education/NBACL administration. Some have suffered meltdowns for which they were blamed notwithstanding their known autism challenges. Some have been sent home under police escort and some have faced criminal charges.

The Autism Society of New Brunswick advocated during the MacKay and Ministerial Committee inclusion reviews for an evidence based approach to inclusive education which would see alternative learning arrangements for those who needed them.

In the current administration philosophy trumps evidence based accommodation of individual needs. Some students with autism disorders and other severe learning challenges are paying the price.

101 Noteworthy Sites on Asperger's & Autism Spectrum Disorders

Facing Autism on Facebook

Why ABA For Autism?

The effectiveness of ABA-based intervention in ASDs has been well documented through 5 decades of research by using single-subject methodology21,25,27,28 and in controlled studies of comprehensive early intensive behavioral intervention programs in university and community settings.29–40 Children who receive early intensive behavioral treatment have been shown to make substantial, sustained gains in IQ, language, academic performance, and adaptive behavior as well as some measures of social behavior, and their outcomes have been significantly better than those of children in control groups.31–4American Academy of Pediatrics, Management of Children with Autism Spectrum Disorders

"We have to look also at environmental factors, and from my point of view, the interaction between the genetic factors and the environmental factors ... It looks like some shared environmental factors play a role in autism, and the study really points toward factors that are early in life that affect the development of the child"
Joachim Hallmayer, MD, associate professor of psychiatry at Stanford University in California

Even Out Environmental and Genetic Autism Research Funding

Right now, about 10 to 20 times more research dollars are spent on studies of the genetic causes of autism than on environmental ones.

We need to even out the funding.

Irva Hertz-Picciotto, UC Davis M.I.N.D. Institute Researcher

My Autism Pledge For Conor

Today I pledge to continue;I Pledge to continue to fight for the availability of effective autism treatments;I Pledge to continue to fight for a real education for autistic children;I Pledge to continue to fight for decent residential care for autistic adults;I Pledge to continue to fight for a cure for autism;I Pledge to continue finding joy in my son but not in the autism disorder that restricts his life;Today, and every day, I Pledge to continue to hope for a better life for Conor and others with autism, through accommodation, care, respect, treatment, and some day, a cure;Today, and every day, I Pledge to continue to fight for the best possible life for Conor, my son with autistic disorder.

Dr. Jon Poling : Blinders Won’t Reduce Autism

"Fortunately, the ‘better diagnosis’ myth has been soundly debunked. ... only a smaller percentage of this staggering rise can be explained by means other than a true increase.

Because purely genetic diseases do not rise precipitously, the corollary to a true autism increase is clear — genes only load the gun and it is the environment that pulls the trigger. Autism is best redefined as an environmental disease with genetic susceptibilities."

We should be investing our research dollars into discovering environmental factors that we can change, not more poorly targeted genetic studies that offer no hope of early intervention. Pesticides, mercury, aluminum, several drugs, dietary factors, infectious agents and yes — vaccines — are all in the research agenda.